Pregnancy and Infant Loss: Families’ Experiences
Pregnancy and Infant Loss Network (PAIL Network) conducted a survey to learn more about how families in Ontario access existing supports, and their experiences of receiving care around the time of a pregnancy or infant loss. View the summary of results below.
Since little was known about how families in Ontario access existing supports, and their experiences of receiving care around the time of a pregnancy or infant loss, the Pregnancy and Infant Loss Network (PAIL Network) conducted a survey through the Bill 141 Facebook Page and the PAIL Network website in January and February of 2017. Residents of Ontario who had personally experienced a pregnancy loss or the loss of an infant in Ontario were invited to complete the survey, as well as anyone who was a partner to someone who had experienced a loss.
This report summarizes 596 responses to a multiple choice, anonymous, online survey that asked families who experienced loss about the quality and types of support received and about the types of support needed in their communities. The purpose of the survey was to guide the development of a plan by PAIL Network to improve and expand services provided to families across Ontario.
The terms “parents” and “families” are used throughout this summary to refer to the person carrying the pregnancy, their partner and their primary supports. There is a need among many of those who have experienced a loss to be referred to as parents, while also recognizing not all people identify as parents at the time of their loss. By using the two terms, we recognize the importance of using terminology that is preferred by those experiencing the loss.
Many families responded that at the time of their loss they were not treated with kindness and respect, did not receive the information they needed, and did not feel supported and cared for by their health-care provider. Overall, families felt their health-care provider lacked the skills needed to care for them. Families experienced stigma from providers and almost half were not told of what supports were available to them after their loss. The majority of families shared that their need for support changed over time.
PAIL Network learned there is a clear need to improve care for families experiencing the loss of a pregnancy or the death of an infant in Ontario. Information about what to expect during and after a loss, as well as how to access available supports should be shared with families as part of good practices in perinatal care. Ongoing support may be beneficial and needs to be tailored to parents’ changing needs. Strategies are needed to reduce the stigma experienced by bereaved families.
After a loss, timely, compassionate, individualized, and skilled support is important to families. While parents frequently seek support and reassurance from interactions with health-care providers, they reported that these interactions often did not meet their needs.
About the survey
Principal Investigator: Jo Watson, PhD, RN(EC) Co-Investigators: Anne Simmonds, RN, PhD, PNC(c,); Michelle La Fontaine, BAA, CLStDipl. And Megan E. Fockler, RN, MPH
The research question
The questions that guided the research study were: “What were the experiences of parents at the time of their pregnancy or infant loss?” and, “How do families perceive the support provided by health-care providers at the time of their loss?”
We summarized responses based on the timing of the loss into the following categories:
- T1: first trimester loss (before 13 weeks)
- T2: second trimester miscarriage (weeks 13-19)
- T2SB: second trimester stillbirth (weeks 20-27)
- T3SB: third trimester stillbirth (weeks 28-42)
- I-NND: Infant or neonatal death (from birth to 1 year)
- MT: Pregnancy termination for medical or other reasons
The report summarizes findings related to:
- Care during the time of pregnancy or infant loss
- Care during the follow-up appointment
- Sources of support for parents and families
- Formal supports for parents and families
- Peer support
- Community supports
- Differences in priorities across the province
- Parents and families’ changing needs over time
About the parents and families who participated in the survey
Most respondents were female, between 30 and 44 years of age and attended college or university. They identified as white and were English speaking. Annual household incomes ranged from less than $5000 to over $150,000, with a third of respondents having annual household incomes greater than $100,000.
Care received by participants
Click on the toggles below to learn more.
Care at the time of the loss
Forty-seven per cent of participants felt they were treated with kindness and respect. Participants experiencing first and second trimester loss, as well as second trimester stillbirth, reported more often that they received treatment that was neither kind nor respectful.
Twenty-eight per cent of families felt they received the information they needed from health-care providers. Families experiencing first and second trimester loss and third trimester stillbirth were less likely to receive the information than other groups.
Thirty-five per cent of families felt supported and cared for by health-care providers. Participants experiencing first and second trimester loss, as well as second trimester stillbirth had the lowest levels of feeling supported.
Thirty-one per cent of participants felt their health-care providers had the skills needed to respond to their needs. Positive ratings for the skill-set of health-care providers were lowest for first trimester loss and infant and neonatal death. The highest rating for feeling supported was experienced by those having a medical termination of pregnancy.
When asked about being given discharge or follow-up instructions from health-care providers, 23 per cent of all participants received no instruction. Participants in the first trimester and second trimester stillbirth groups reported the lowest levels of receiving discharge or follow-up instructions.
Forty-nine per cent of families experienced stigma from health-care providers (defined as insensitive comments about how to feel, grieve, or experience the loss that you did not agree with, or care that did not recognize the significance of your loss or your need for support). Participants in the first trimester and third trimester stillbirth groups reported experiencing stigma at the time of their loss more often than participants in other groups.
Care at the follow-up appointment
The majority of participants had a follow-up appointment with a health-care provider after their loss. Half of those who had a follow-up appointment reported that they were offered an appointment, the others made an appointment on their own, or didn’t want an appointment . The frequency of being offered an appointment and attending the appointment was lowest in the first trimester group and highest in the third trimester stillbirth group.
At the follow up appointment, 69 per cent of participants shared that they were treated with kindness and respect, and 60 per cent felt supported and cared for by their health-care provider. Slightly more than half of participants felt their healthcare provider had the skills needed to respond to their needs. At the follow-up appointment, 27 per cent of participants reported experiencing stigma about their loss from the healthcare provider.
Support after loss
The most common sources of support at the time of the loss included partners (82 per cent), friends (69 per cent), parents (63 per cent), and other family members (44 per cent), employers (35 per cent), and co-workers (28 per cent). Online support (26 per cent) and other bereaved parents (25 per cent), were also sources of support. When asked to choose their most important source of support, 43 per cent of participants chose their partner. Health-care providers were sources of medical, physical, and emotional support. Click on the toggles below to learn more.
Families were asked about the types of formal and informal support that they were told about around the time of their loss. Written support, peer support, and professional counseling were the top three sources of support shared with them. Forty five per cent of families were not told about any type of support. This was most common in the first and second trimester groups.
Fifty-eight per cent of families accessed support following their loss. In-person support was the first or second most helpful support for all subgroups, except with families who had a medical termination of pregnancy. Books and written resources were identified as the second most helpful support, except for the medical termination of pregnancy group, where books were the most helpful support. Social media and the internet were valued sources of support across subgroups.
Most families did not find is easy to access support. Obstacles encountered when trying to access support included not knowing what supports were available, not having supports available, or supports being unsuitable. Stigma or silence about pregnancy and infant loss were also obstacles.
Peer support was accessed by 78 per cent of respondents. Accessing peer support was most common for survey participants in the third trimester stillbirth loss group and lowest for first trimester loss group.
For parents who indicated peer support was helpful, the top reasons included:
- Knowing that I was not the only person to have experienced pregnancy or infant loss (89 per cent)
- Being able to hear about other people’s experiences with pregnancy or infant loss (83 per cent)
- Being able to talk openly about my loss experience (78 per cent)
- Being able to share my story with others who have experienced pregnancy or infant loss (74 per cent)
- Feeling less alone or isolated (71 per cent)
- Being able to talk openly about my baby (70 per cent)
Reasons why accessing peer support was challenging included the group location (18 per cent), there was not enough support for men (16 per cent), and the inconvenient timing of meetings (13 per cent).
Twenty-three per cent of families were able to get the support they needed. Families experiencing first and second trimester losses were least likely to get the support they hoped for. Eighty four per cent of families said there was inadequate support available for families experiencing loss in their local community.
Key areas of need that families identified in their local community included:
- Reducing stigma or silence about pregnancy and infant loss (69 per cent)
- Automatic referral to bereavement or counseling supports (66 per cent)
- More public awareness or education about the frequency and impact of pregnancy and infant loss (62 per cent)
- More public awareness or education about existing supports (59 per cent)
- Better follow-up by health-care providers for families after loss (56 per cent)
- Better training for health-care providers who care for families experiencing pregnancy and infant loss (55 per cent)
- Early pregnancy loss clinics (55 per cent)
- Availability of skilled and compassionate health-care providers (53 per cent)
- Better mental health supports (51per cent)
- More information in general about pregnancy and infant loss (51per cent)
Click on the interactive map below
The map below illustrates the top issue for families, and corresponding percentage, for each Local Health Integration Network in Ontario (LHIN). The number of responses per LHIN is also listed.
- Reducing stigma or silence about pregnancy and infant loss 68%, responses 345
- Automatic referral to bereavement or counseling supports for families after loss 65%, responses 331
- More public awareness or education about the frequency and impact of pregnancy and infant loss 62%, responses: 314
- More public awareness or education about existing supports 59%, responses 299
- Better follow-up by health-care providers for families after loss 57%, responses: 288
- Better training for health-care providers who care for families experiencing pregnancy and infant loss 57%, responses 287
- Early pregnancy loss clinic 54%, responses 276
- Availability of skilled and compassionate health-care providers 53%, responses: 270
- Better mental health supports 52%, responses 262
- More information in general about pregnancy and infant loss 51%, responses 259
Changing needs over time
Seventy-eight per cent of participants indicated that over time, the type of support they needed changed. Reasons for this included relying more on themselves, needing more formal professional one-on-one support, or still needing support, but not as often as before. One third of participants relied more on family and friends for support over time.
596 families told us at the time of their loss:
- 47 per cent felt treated with kindness and respect
- 28 per cent received the information they needed from their health-care provider
- 65 per cent did not feel supported and cared for
- 45 per cent were not told of available supports
- 69 per cent felt their health-care provider didn’t have the skills to respond to their needs
- 51 per cent experienced stigma from a health-care provider
Families’ responses indicate a clear need to improve care for those experiencing the loss of a pregnancy or the death of an infant in Ontario. Information about what to expect during and after a loss, as well as how to access available supports, should be shared with families as part of good practice in perinatal bereavement care. Ongoing supports should be tailored to parents’ changing needs. Strategies are clearly needed to reduce the stigma experienced by bereaved families.
When families experience a pregnancy or infant loss, their interactions with the health-care system and health-care providers have lasting effects. Health-care providers can make a positive difference in how loss is experienced and in overall well-being by minimizing uncertainly and isolation and by working with sensitivity within physical environments often not designed for experiences of loss. Compassionate care and sensitive language matter to families, as does an acknowledgement of the loss and concrete information about what to do and what to expect next. Our findings shed light on the difficulties families face after pregnancy or infant loss in Ontario, and the opportunities to make positive changes.
The greatest opportunity is to improve care for families experiencing first trimester losses.
Families experiencing pregnancy loss in the first trimester experienced the least kindness and respect, felt the least supported and experienced the most stigma at the time of their loss when compared to other loss groups. They were the least likely to be offered a follow-up appointment and least likely to access support and get the support they needed. Families experiencing early pregnancy loss most often experienced stigma at the follow-up appointment. Understanding the lower quality of care received by those experiencing early pregnancy loss highlights the need for significant system improvement.
What people experiencing perinatal loss want:
- Flexible policies, for example allowing families in the recovery room
- Smooth transitions, for example information being shared amongst the health-care team or avoiding re-registering with each visit
- Options for by-passing emergency rooms
- Space available in the hospital away from new parents and babies
- Access to knowledgeable, skilled, and empathetic caregivers who listen to them and acknowledge all dimensions of their well-being, including physical and emotional
- To be told honestly what to expect and what to do next
- To be provided with guidance and information to help them understand the process
- Ongoing supports as needed
- Care providers to use sensitive language (i.e. baby instead of fetus or products of conception; acknowledgment of loss by saying, “I’m sorry for your loss” or “I’m sorry we are meeting under these circumstances”)
- Care providers to recognize the lasting impact of perinatal loss
- To be treated as individuals
- To have their grief acknowledged
Training recommendations for health-care professionals should focus on:
- Understanding the importance of inclusion in decision making
- Demonstrating understanding, respect, and support regarding the difficult choices families need to make
- Offering choices in the timing and method of termination or medical procedures and honest explanations about what to expect and what to do next
- Making memories following a loss
- Recognizing their loss and grief
- Ensuring comprehensive follow-up (posing distinct questions such as “Physically, how are you feeling? What symptoms are you going through?” and “Emotionally, what does this loss mean to you?”
- Ensuring proactive follow-up (i.e. taking the burden off the family to find their own support)
We thank the families who shared their experiences. At PAIL Network, we are committed to improving care for families in Ontario.